Columbus and the Valley

Cancer Treatment Enters New Phase

I-10 is no picnic. Especially with miles and miles of construction, steady rain, cold temps, fog and dim-witted drivers who somehow still don’t know that if people would just use the left lane to pass and then get back over to the right, everyone would be able to travel at their preferred speed and no one would be held up. I am an assertive, patient highway driver, but I swear to God, if I had a rocket launcher on the front of my Lexus, I would have initiated several launch sequences to take out left laners during our recent trip across half the country to Houston’s M. D. Anderson Cancer Center.

We have officially entered into a new phase of my eight-and-a-half-year dustup with kidney cancer. Let me catch you up on my treatment timeline and then I’ll tell you what we heard out in Houston.

June 11, 2009 Radical left nephrectomy + 12 lymph nodes
August, 2009 Started ASSURE clinical trial
September, 2010 Discovered 2 centimeter tumor in spine at L2, unblinded from trial
October, 2010 Biopsy shows tumor is renal cell cancer metastasis
December, 2010 Stereotactic radiosurgery of spine at Emory University Hospital
August, 2011 Spinal tumor not dead and growing again
August 19, 2011 Lumbar fusion surgery at L1-L3 at Midtown Medical in Columbus
October 8, 2011 Emergency lumbar laminectomy surgery at Midtown Medical
October 20, 2011 Stereotactic radiosurgery at John B. Amos Cancer Center
October 26, 2011 Started monthly Xgeva injections to strengthen spinal bones
June 21, 2012 Discovered 3.9cm tumor on left adrenal gland
July, 2012 13-day trip to M. D. Anderson Cancer Center for evaluation
• Brain MRI, bone scan, chest x-ray, CT scans of chest, abdomen and pelvis, biopsy of adrenal tumor confirms RCC
September 3, 2012 Started High-Dose Interleukin 2 therapy at Duke University
Hospital
September 8, 2012 Washed out of HD-IL2 therapy, due to creatinine spike
November 13, 2012 Started taking 800mg daily dose of Votrient
July, 2013 Scans show 90% reduction in adrenal tumor, have lost 80 pounds
January 14, 2014 Have lost 100 pounds, liver toxicity, have to stop Votrient
July 22, 2014 CT scan shows left adrenal tumor growing again
August 28, 2014 Microwave ablation of adrenal tumor with complications due to
300/200 blood pressure spike during procedure
September 4, 2014 Saw cardiologist in Columbus to confirm no heart damage
March 6, 2017 CT of chest, abdomen and pelvis discovered spinal met is growing
again
April 6, 2017 Started taking 60mg daily dose of Cabometyx which is shrinking tumor
June 1, 2017 Had first phone discussion with Prof. Dr. Michael Staehler, an RCC
specialist in Munich, Germany
January 9, 2018 Traveled to M. D. Anderson Cancer Center to meet with Dr. Larry Rhines, neurosurgeon.

Several months ago we were introduced to Prof. Dr. Michael Staehler, one of the top kidney cancer specialists in Europe through Dena Battle, president of KCCure, a national kidney cancer research foundation. If you’ve been a regular reader of my blog, you know that our lives have intersected with Dena’s throughout our eight-and-a-half year war with RCC. Dena connected us with her colleague, Dr. Staehler and he has been on a mission to assist us (without compensation or any kind of formal arrangement) in finding the right neurosurgeon with whom to consult. He settled upon Dr. Rhines and we went to see him last week after completing another MRI of my lumbar spine out in Houston.

Dr. Staehler has been incredibly responsive to our situation by hand picking Dr. Rhines, visiting with him on a recent trip from Munich to Houston and even reviewing over eight years worth of scans from my case file! Dr. Rhines only found out during our initial discussion that Dr. Staehler had never met us and that I am not officially his patient. He was blown away and commented that he’d never quite seen anything like that — a doctor of Dr. Staehler’s stature taking such a keen interest in the case of someone whom he had never even met. I’m sad that we missed seeing Dr. Staehler by only a few hours in Houston. I hope we can make that meeting happen sometime soon.

Dr. Staehler has shared my scans with colleagues of his in Munich and collectively, they felt we have a chance to surgically remove this tumor from my spine and possibly change the direction of this cancer with a “curative” surgery. I used the quotes because kidney cancer is an incurable disease today. This monster surgery would only cure me to the extent that it might render me NED (No Evidence of Disease) without scans seeing any evidence of disease outside of this area of my spine. My job is to try to stay alive long enough for something that could cure me to be developed. Your contributions to KCCure might help with this.

Dr. Rhines realized early in our initial meeting that Jill and I are well-educated as patient and caregiver, so he didn’t mince his words. He spoke in shocking word pictures of the risk, complexity and totality of an en bloc spondylectomy surgery. He described in vivid detail that this surgery would be disfiguring and would likely leave me even more profoundly physically limited than I am today. Dr. Rhines explained that these huge surgeries have been done to a greater degree in Europe because countries in Europe have lagged behind the United States in radiation oncology and drug therapy. So, they did these large surgeries because that was the only hope of keeping people alive in the absence of less-invasive curative radiation and drug therapy.

The en bloc spondylectomy would include the harvesting of bone from one of my legs for use in aiding my spine to heal from the surgery. This video link is of Dr. Rhines performing the operation. He told us that most of these procedures in the United States are done on patients with primary bone tumors, not on people like me with metastatic disease in the bone from another primary tumor site. Here’s why: If you recall from my timeline above, in addition to the initial nephrectomy, I’ve had two large spine surgeries and two 16-gray rounds of stereotactic radiosurgery and the microwave ablation adrenalectomy. There will be significant scarring and structural turmoil inside me from all that activity over the past nine years of being treated for cancer. Dr. Rhines described the extreme challenges standing in the way of us getting a perfect outcome from a surgery like this. He told us frankly that he would rather find other options for us that would be less invasive and dangerous. Since it has been many years since I had any radiation to my spine, that might be able to to happen. There is also immunotherapy that we haven’t tried.

Where does that leave us? Dr. Mike Gorum’s initial 2012 spine surgery continues to be structurally sound, in spite of the sad fact that the formerly solid bone where one of the titanium screws Mike installed is screwed into what is now, new tumor tissue. With the en bloc spondylectomy being such a difficult procedure in light of scarring from the former surgical activity and radiation, Dr. Rhines thinks we should consult with a new M. D. Anderson team to augment my local care. Jill and I agree that if I’m going to have a chance at any kind of normal life, we have to pull out all the stops and cover every possible angle to find the right procedures and the right people and technology to deliver them.

Dr. Andy Pippas continues to encourage us to explore our vast kidney cancer network to try to find exactly the right procedures, drug therapies and specialists to keep ahead of this disease. Andy will continue to quarterback this growing team of medical professionals going forward. We have an initial meeting with renowned kidney cancer medical oncologist, Dr. Eric Jonasch, at M. D. Anderson Cancer Center on Monday, February 5 and will likely be referred to radiation oncologist, Dr. Amol Ghia, to see if additional radiation could be used to knock down this tumor.

I really liked the way Dr. Rhines described what needs to happen going forward. He discussed our consulting with these new specialists in concert with the addition of regular MRIs so that we can monitor our thankfully stable current situation for microscopic changes. If those changes come, and we see the tumor beginning to grow again, in his words, “We’ll see who’s up.” If it is radiation, then Dr. Ghia will run with the ball, or if it is drug related, then Drs. Pippas and Jonasch will be up. If it is neurosurgery, then Dr. Rhines would take it.

At the very least, we’ll come out of this recent skirmish with a solid plan. I speak from experience, that cancer patients like it when they can see a plan. It adds a level of direction to the usual chaos of living with cancer. Despite my increasingly limiting physical condition, my mind is on fire with possibilities and my medical dream team continues to pull rabbits out of hats to keep us ahead of this disease. We left Houston tired, but encouraged that we still have dry powder for future firefights.

We continue to be thankful for the John B. Amos Cancer Center and with this latest trip out to M. D. Anderson, I am more sure than ever that it is imperative for everyone with a spare nickel to give it to the Columbus Regional Health Foundation’s efforts which are underway to renovate and update our wonderful local cancer center. Click on the link and use the drop down menu to designate your gift to the John B. Amos Cancer Center.

Because of the nature of kidney cancer and its difficulty to treat, I’m committed to continuing to write extensively about our efforts to survive and live with this disease. This disease is one of the ones that demands the patient to pay attention and be educated on their condition. I’m trying to do my part to help others with that. These posts are long, technical and can be pretty boring for the rest of you. For a patient, a post like this can really help them see what is ahead and how to attack that scary future. Being smart and responsive can go a long way toward assuring that patient even gets the chance to have a future.

Jill and I appreciate the support we’ve received from our family, friends and our life network. We feel your presence in our lives every day, especially when we are in the trenches dealing with something new like we are now. I am spending a good bit of time doing research, scheduling doctor visits and procedures and overseeing plans to update our home to accommodate our changing needs, so please be patient with me if you feel like I haven’t responded quickly enough to your inquiry. I started this blog as my main line of communication and when things are swirling, something like this is the only sane way for me to try to stay in touch with the beautiful people who are interested in my wellbeing.

 

The Day My Tears Came Back

In an effort to continue to drop digital insight (for my brothers and sisters in the kidney cancer club) about my methodical return from the pits of hell, there is more to report. All of it is good. We spent a nice, long doctor visit yesterday with Dr. Raj Alappan, my nephrologist. Strainer (for those who don’t know, my remaining kidney, which was named in an online contest on my blog) continues to improve. All my numbers relating to GFR, glomerular filtration rate; creatinine; blood pressure; A1C and all other issues with Strainer are either stable, improved or in the case of one important indicator, dramatically improved. Those visits with doctors to receive results from labs, scans or tests are full of tension that just takes a while to slough off.

Yesterday was a good day.

A little over a month ago, I mentioned that I intended to wean myself off the 20mg of Celexa I have been taking daily for almost six years. So it began — I took 10mg for two weeks and 5mg for two weeks and I was free of any daily dose six days ago. I can testify about newly-found clarity, sharpening senses, a greater enjoyment of my work and the ability to feel, without those feelings being filtered through a Celexa scrim.

The returning ability to take a full-frontal emotion head-on was tested today. I continue to get comments every day about my blog post “Sad Display of Bullying at Last Night’s MCSD Board Meeting.” During my conversation with every single one of these folks, I have asked them if they’ve ever been bullied. The ones who have, get a certain look in their eye. The become smaller. They still feel the sting of the encounter, even if it happened a long time ago. Even if it happened in 1958 in the bathroom of East Highlands Elementary School. I grew up on 20th Street, in East Highlands, until my maternal grandparents were both killed in a car crash near Chattsworth, Ga. My family moved into their home on Britt David Road, in front of the Columbus Metropolitan Airport, where my parents still live.

I will never forget the sound of that door being slammed open against the wall and how  my kindergarten five-year-old self felt when I was confronted by a covey of sweaty sixth graders. They pushed me around. They threatened me. They frightened me. My recollection of the incident included somehow having my mom come to school to discuss what I had been through. She’ll likely weigh in on her remembrance, if that story was even worthy of being remembered. Telling the story now makes me sound like a little sniveling wimp but I won’t forget it as long as I have a memory.

An aside: Monday, September 14 at 6 p.m. will be the next regularly scheduled MCSD board meeting. That will be a great opportunity for you to go to a board meeting and show your support for our board, Superintendent Dr. David Lewis, his cabinet and all the educators and employees of our public school system. 

Today at my Wednesday Rotary Club of Columbus meeting, the Muscogee Educational Excellence Foundation (MEEF) Teacher of the Year Sheryl Green was our speaker. Her well-written, emotional, powerfully delivered speech was one of the best Rotary speeches of my 18 years of Rotary. Most of the people at my table wiped up tears, as Sheryl talked about her Jordan High School misfit soccer team. Her stories were tear jerkers, full of the love of a great educator and broken, hard young students, many of whom didn’t hear the words, “I love you.” Ever.

Except when their coach look them in their eyes and told them just that. “I love you.” Some responded and others turned a deaf ear because they weren’t taught how to hear and accept those words.

I didn’t know what to do about myself with tears coming out of all four corners of my eyes. If you get the chance to hear or read Sheryl Green (she has a column every Wednesday in the Columbus Ledger-Enquirer), run toward her. She has a powerful story to tell and she is damn good at telling it.

Back at the office after Rotary, I took a look at my Facebook account and saw a request for prayers for Shannon Burgess, the daughter of a childhood friend of mine, Linda Parks Smith. Shannon is out at M. D. Anderson Cancer Center in Houston, Tex. in the fight of her life. I touched my keyboard and felt the tears flow for the second time today. I wanted Linda and Shannon to know that I was sending my love to them as only a survivor can experience and give. Something about talking to others in a cancer fight makes my memories rise up. I feel so connected to them and so many others who are in all the stages of cancer from recently-diagnosed to tough battle scarred cancer veterans. Sliding back into a conversation that dredged up some of the bad times was a deeply emotional experience for me today. Please remember Shannon and Linda and their families in your prayers. They need them right now.

The tears got next to me. Enough to wonder if I’m emotionally stable enough to do without the medicine. I suspect all cancer survivors are left with their own demons to deal with. Mine were a healthy depth from the surface, in light of the exceedingly tender subjects that I have been a part of seeing, hearing and experiencing today.

Today was a good day.

 

Local Interventional Radiologists Deliver Minimally-Invasive Solutions

From the very beginning of my new normal, which began on June 11, 2009 when Dr. Ken Ogan used a DaVinci robot to surgically remove my diseased left kidney and 12 lymph nodes, I was left with an incurable case of renal cell carcinoma (RCC) and the stark realization that my job was to seek out the very best medical care I, with my great medical insurance and the shallow pockets of a small business owner, could afford. I had to use whatever medical wisdom was in existence to stay alive long enough to be strong enough to endure a more meaningful treatment if and when it came along.

To date, an initial occurrence and six separate subsequent battles with RCC mets have not managed to take me out and one of those “more meaningful treatments” was available to me locally and I have been fortunate enough to have been rendered NED (No Evidence of Disease) for the 7th time.

Here is a brief recap of the procedures (except for listing all CT/MRI scans, which have continued to occur at about 3 – 6 month intervals, depending on what was going on) and decisions we’ve made that got us to the office of Dr. Nishant DeQuadros:

June 11, 2009: Dr. Ken Ogan at Emory University Hospital performed radical left nephrectomy + 12 lymph nodes (1 positive for RCC).

August, 2009:  Started ASSURE clinical trial (Sutent/Nexavar/Placebo) and ultimately completed trial.

September, 2010: Discovered 2 cm tumor in spine at L-2, and was unblinded from placebo arm of clinical trial. Drawing the placebo arm of the trial turned out to be the good news, in that going forward I would be drug naive, allowing me more access to other therapies.

October 21, 2010: Biopsy of spine determined the lesion is metastatic RCC.

December 2, 2010: Stereotactic Radiosurgery (SRS) at Emory Midtown Hospital in Atlanta

March, 2010: Radiation oncologist says that I’m NED.

August, 2011: Medical oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3. Three weeks post surgery, developed severe (#10) back pain. Treated with time-released morphine and dilaudid for breakthrough pain. These weeks of pain and insomnia were the darkest days of my life. As I write this, I’m having trouble conjuring what the pain felt like. What it was like to be just aware enough to see the little hand of the clock find every click on its way around the dial, yet gladly not aware enough to be forced to remember some of the truly stupid television shows and movies I watched. Alone in a dark room with my ever-present plastic trash can, a box of tissues, a glass of water and a sack full of narcotics. The world looks very different from that room.

October 8, 2011: Some time before 5 a.m., I bent over to remove power plug from wall socket and experienced a dramatic loss of strength on my right side. I contacted my neurosurgeon, Dr. Michael Gorum, early Saturday morning. He instructed me to get to the emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, the strength can be regained in legs with therapy. Two major spine surgeries within 8 weeks and a quickly-growing kidney cancer metastatic tumor trying its best to put me down.

October 10, 2011: I was moved by ambulance to the John B. Amos Cancer Center, where I was evaluated for stereotactic radiosurgery to attempt to kill the tumor in my back and returned to my room at the hospital. Got food poisoning (Yes, the day after my second back surgery in eight weeks! Can you believe it?) from a non-hospital meal I ate on Monday evening, so we delayed SRS until Thursday,

October 20, 2011: 16-greys of radiation in a single one-hour treatment aimed to kill the tumor in my spine.

October 26, 2011: Started monthly Xgeva injections to prevent further bone mets.

December 7, 2011: CT scans show NED.

March 15, 2012: CT scans show NED.

June 21, 2012: CT scan showed 3.9 cm tumor on left adrenal gland and slight enlargement of cyst in right kidney.

July 16, 2012: Decided to confer with specialists at M. D. Anderson in Houston, Tex. and met with genitourinary medical oncologist Dr. Lance Pagliaro there at M. D. Anderson.

July 17 – 18, 2012: Had bone scan, brain MRI, CT of chest, abdomen and pelvis with no contrast and a chest x-ray.

July 20, 2012: Met with interventional radiology to discuss needle biopsy of adrenal tumor.

July 25, 2012: Still at M. D. Anderson and needle biopsy of left adrenal tumor confirmed it was metastatic renal cell carcinoma.

September 3, 2012: Started HD-IL2 therapy at Duke University Hospital under care of Dr. Dan George and Dr. Michael Morse. Received 9 doses and creatinine spiked and didn’t come back to my baseline of 1.8, so I washed out. They wouldn’t allow me to finish part B of round one.

October 19, 2012: Had CT of chest, abdomen and pelvis W/O contrast, because of high creatinine.

October 26, 2012: Met with Dr. Pippas and found out adrenal tumor and nodules in kidney are stable. He recommends starting a TKI and plans to confer with Dr. George to determine which one they recommend.

November 13, 2012: Started with 800mg daily dose of Votrient. Took for 2 weeks and high blood pressure and other side effects caused oncologist to reduce daily dosage to 400mg. On 400mg dose for 3 weeks, increased to 600mg dose for 2 weeks and now on 800mg dose daily and dealing with side effects well.

July 11, 2013: CT scan of chest, abdomen and pelvis (W/O contrast) showed 90% reduction in adrenal tumor, no sign of two small right kidney lesions. Have lost 80 pounds due to GI complications with Votrient, but getting along fairly well. Have been able to stop taking Norvasc completely and have halved my daily Coreg dosage. Getting great blood pressure control, likely due to dramatic weight loss. Creatinine also looks good at about 1.5. So, might be able to get CT scans with contrast next time out.

November 1, 2013: CT scan with contrast of chest, abdomen and pelvis showed NED! Have lost 90 pounds due to GI complications of 800 daily mg of Votrient. Creatinine at 1.32 and other labs looks fantastic.

January 14, 2014: Have lost 100 pounds. Blood pressure is rising and with weight loss, this shouldn’t be the case. Hovering at around 180/115. So, went by to see Dr. Pippas to check blood pressure and they decided to triage me and work me in to see the doctor. Warned me that if I’m developing liver toxicity, we’ll have to make some changes. Had liver panel blood work done in lab. Dr. Pippas TOLD me to stop taking Votrient for 14 days and to take 20mg Prilosec every morning for next 14 days. Says he hopes my body will reset and that I can go back on Votrient after 2 weeks. Also, he added back 5mg of Norvasc to my daily meds to see if we can drive back the elevated blood pressure.

January 16, 2014: Got results of liver panel and we’re in normal range, so stopping I’m stopping Votrient for 14 days and taking Prilosec, carvedilol and Norvasc.

February 7, 2014: CT of chest, abdomen and pelvis shows completely stable and normal. Dr. Pippas says I’m NED again. Still tired, so he suggested I go back on nightly CPAP therapy and start some kind of exercise regimen. Also, wants me to maintain good immune system boosting diet and to not gain weight. At 155 pounds, about what I weighed when I left high school. Options presented to Jill and me:

A) stay off Votrient, scan every 3 months for a year
B) restart maintenance dose (either 200mg or 400mg) of Votrient

I asked Dr. Pippas to confer with Dr. Dan George at Duke, a colleague of his and someone who knows my case quite well. Also, I called Dena Battle, who knows this disease better than most doctors on the planet to ask her gut reaction to what doctor has advised. Made decision to stop taking Votrient.

July 22, 2014: CT scan with contrast shows 2.5cm metastasis on left adrenal. Same side as nephrectomy.

July 23, 2014: Discovered 2.5cm adrenal RCC metastasis and Dr. Pippas said surgery would be best option. We left the next day for a long weekend with friends in Destin, Fla.

August 6, 2014: Met with local surgeon Dr. Andy Roddenberry to discuss adrenalectomy procedure. Here’s an excerpt from my blog:

August 21, 2014: Excerpted blog post named “Eight Months:”  There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

We left Dr. Roddenberry’s office feeling the dread of making a decision to opt for a surgery that, even if successful, would really take me down physically and could significantly compromise my immune system. This is where the story gets really interesting, if you believe in karma. If you believe in a god, or if you worship from the torn front seat of a 1960 rusted, formerly white Chevrolet pickup at the 2nd Dirt Road Church of What’s Happening Now — this was the perfect information for me to hear at exactly the right time….

My friend, Dr. Granville Batte, called me and suggested we might want to meet with new Interventional Radiologist Dr. Nishant DeQuadros. That contact from a friend helped us find clarity. I promise you this: If you are a cancer patient who doesn’t have full faith in your doctor, and/or if you can’t see your a clear view of your feet along the path you have chosen, you are surely miserable. It is bad enough to feel bad, but to feel bad and be weighted down by stress related to your treatments makes the journey that much more difficult.

Here’s what I did to find that sweet spot of clarity before a new therapy: We made an appointment to meet Nishant DeQuadros and my work began. My doctors are my business partners. They provide a service that determines what is wrong with me and the crystal-clear vision backed up with the talent, experience and will to deliver a treatment path that will, at the very least cripple and at the very best in my case, completely shut down the disease process. I, and my insurance company pay them, their professional assistants and clinicians, staffs, technicians, labs, bean counters and hospitals. Then, the real work starts — research.

I fill whatever amount of time I can carve out prior to the first meeting with a new doctor with finding out everything I can about them. Where they’re from. Where they went to school. I seek out their professional writings, look for any feedback I can get from ratings sites, inquire of them with every one of my trusted medical sources and see if they have any kind of social media paper trail I can follow. I also like to find out who their friends are and if I happen to know them, I can’t pick our mutual friends’ brains to find out if they would put their life in the hands of this doctor. Melissa and Jim Thomas are friends of the DeQuadroses. That was a great thing to hear, right at the start.

I got a sweet surprise when I started vetting Dr. Nishant DeQuadros. The more I learned about him and his company, Georgia Radiology Imaging Consultants, the more excited I got. The doctors in this practice are extremely well trained. They do the kinds of procedures that are hard to come by in a community hospital setting. Often these highly-specialized radiologists are doing these kinds of procedures in larger urban or university hospitals. I found out later, just how important it was that these superdocs were here and that one of them was able to take my case.

Jill and I walked into Dr. DeQuadros’ office and a young, handsome guy in a white coat greeted us. We sat down, looked at my scans and we talked about how the ablation would be done. He brings mad experience to the table. At the end of that visit, we had that clarity that is so important.

August 28, 2014:  Interventional Radiologist Dr. DeQuadros and Anesthesiologist Dr. Mark Pinosky performed a microwave ablation of my left adrenal and its encapsulated RCC met. Complications during procedure caused Dr. DeQuadros to have to make four passes to get enough of a burn to completely finish the job. Disruption of my adrenal gland and the presence of the RCC metastasis caused a 300/200 blood pressure spike during the procedure. Because of the fear of cardiac damage from the BP spike, I spent the night in an intensive care room, so I could be monitored.

In my intensive care room the next morning after the procedure, I learned how serious the situation became during the minimally invasive operation. When they saw that I was having a major hypertensive reaction, Dr. DeQuadros ran a central line to my heart from behind me left knee, and, along with Dr. Pinosky, they monitored my blood pressure with every beat of my heart, utilizing drugs and procedures they had at their disposal to control wild blood pressure swings while still completing the procedure.

August 29, 2014: I was released with an appointment to see Dr. Shane Darrah to determine whether the high blood pressure had damaged my heart muscle.

September, 4, 2014: Saw Dr. Darrah and had stress test.

September 8, 2014: Had echocardiagram in Dr. Darrah’s office. It was determined that no heart damage resulted from blood pressure spike during microwave ablation.

October 2, 2014: CT scan with contrast (80% of dose). Still NED.

February 12, 2015: CT scan with contrast (80% of dose). Still NED.

The microwave ablation therapy I received here in Columbus was one of those cutting-edge treatments that can extend the life and protect the quality of life of a patient. In this process, I appreciated the candid advice given to me from Dr. Roddenberry that I should seek another, less invasive option that wouldn’t expose me to such a large, dangerous surgery that might negatively impact my compromised immune system. The incredible truth is that the huge surgery and the minimally-invasive microwave ablation should yield the same results (if perfectly executed). One would have cost me six days in the hospital and another six weeks of recovery. The other was performed on a Thursday and I was back in the office on Tuesday. I would have returned to work on Monday, had it not been the Labor Day holiday.

The list of vascular and interventional radiology treatments that are offered here by Drs. DeQuadros, Hart and Vo is quite long. If you receive a diagnosis that might be remedied by one of the treatments from this list like I did, you’d be wise to do a little Googleing to see if you might be better served by this type of care. Here’s the best part: When the therapy is finished, you can go home and sleep in your own bed. That is a mighty good thing.

Votrient is Doing the Job

Four and a half years ago, I received a dire diagnosis. Renal cell carcinoma. Kidney cancer. I opened my internet browser and found out just how dire — I had a five percent chance of being alive in five years. I saw my life pass before my eyes. My beautiful sons. My parents, my friends, my pets. Oh God, my sweet Jill. I didn’t want to leave them. How would I ever start the process of dying? When someone tells you that death has come knocking, you just never know how you’ll react. Much like, I’m sure, that warrior’s realization that the only thing between them and an angry enemy is the grit and determination they can conjure as they plan their attack. I’ll admit, I didn’t know what the hell to do. So, I did the only thing I knew how to do. I wrote — a lot. Prior to this post, the words I’ve written and those that have been written back to me fill up over 400 8.5″ by 11″ single-spaced pages! I was, and continue to be, scared to death.

At my first visit with local hematologist/medical oncologist, Dr. Andrew Pippas at the John B. Amos Cancer Center, he cautioned me to be aware that the internet would likely deliver an outdated view of my prognosis. He assured me that there were new drugs coming online and he looked right into my eyes and said, “You’re not going to die any time soon.”

Since that office visit well over four years ago, Dr. Pippas and I have had many ups and downs. We have argued. I have even refused at least one treatment course he wanted me to begin. Our relationship has been one of give and take. Despite any differences we’ve had, what Dr. Pippas has never wavered from, is his position as the most solid, wonderful leader of my medical team. We’ve sought opinions from the best RCC doctors on the planet in New York City, at Duke University Hospital in North Carolina and at cancer mecca, M. D. Anderson Cancer Center in Houston, Tex. I have also relied on the testimony from a cadre of RCC patients, some of whom are still alive and others who have, despite the best efforts of the best doctors in the country, have gone on to their greater rewards and have left pain and suffering as well as their loving friends and families behind.

Those of you who are regular readers of this blog know that if I am posting, I am likely in a frightened state. That I have not posted much lately is a sign of good things in our lives. Yes, I’ve lost 90 pounds. That is good. Good for Strainer, my remaining kidney. Good for my body’s processes. Great for my creatinine level. Great for my blood pressure. Great for Chancellor’s Mens Store, because not a single item of clothing I own, including shoes, underwear, pants and shirts fit me. Only my socks and hats fit me. I have managed to cobble together a manageable skinny wardrobe that I am not embarrassed to be seen in out on the street, gratefully discovering that really expensive “stretchy” jeans are now a luxury that I will never be without.

So, the good news is that this cancer, for the moment, is not trying to kill me. Sadly though, the Votrient that I’m taking 800 mgs. a day of, is whipping my ass. Votrient has taken the pigment from my hair. All of it. Votrient has given me chronic, daily diarrhea. Votrient makes me throw up. Out of the blue and without much warning. In addition to the original site of this cancer in my left kidney and in at least one lymph node near that kidney, I have endured metastases in my spine at L2. Two back surgeries, two rounds of stereotactic radiosurgery (radiation) have beaten those metastases back.

Last year, doctors discovered other mets in my left adrenal gland and possibly in my right kidney. The Votrient was begun, according to superstar surgeon, Dr. Christopher Wood at M. D. Anderson, to “see if it will make these tumors smaller in advance of another surgery to remove the adrenal gland.” That was a year ago. Despite making me skinny, washed out and pale and always in a gastrointestinal turmoil, I found out yesterday that Votrient is working for me. When I say “working,” I mean working like a son of a bitch! After reading my scans yesterday, Dr. Pippas told me that my tumors are gone. I am by no means cured. But what I am is alive, still among my loved ones and fairly well able to enjoy life. I’ll take that for now.

I am still in research mode. There is a new clinical trial at Johns Hopkins in Baltimore that delivers a combination of two new drugs and it is showing mind-blowing response rates among RCC patients. The bad news is that the tumors will have to return in order for me to qualify to enter that trial. With cancer, there is always bad news sprinkled in the with little good news you hear. I’ll keep looking for that magic bullet. I’ll keep taking Votrient. I’ll keep loving my awesome family. I’ll keep hugging my pets. I’ll continue to bathe in the gentle love coming from our huge cadre of friends.

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RIP Clarence Clemons

I’ve been caught up in a swirling mass of indecision. Frozen in place. Can’t write. Can’t focus. Afraid to look forward. Unwilling to look back. Hung up in the now. It took a dead man with a saxophone to shake me loose. Driving along this morning, heading into town to meet with Dr. Pippas to find out his recommendation for a much-dreaded tyrosine kinase inhibitor medication, I was listening to the Classic Rewind channel on Sirius/XM satellite radio.

Violins and piano — I cranked up the volume until it hurt. Crystal clear highs delivered by tweeters, solid chest thumps from the big woofer that stretches across the back deck of my car and those strains so familiar from Bruce Springsteen and the E Street Band’s, 1975 album, Born to Run. Gooseflesh popped up on my arms. Then Clarence Clemons and his wailing sax delivered the iconic Jungleland solo and it all broke loose. Like a boot off my neck.

I felt my shoulders drop and the tension drain out of my face.

“The poets down here don’t write nothing at all. They just stand back and let it all be.”

My mojo was coming back, compliments of Clarence Clemons, God bless his soul.

Where did I leave you last? Oh yeah, screw Lance Armstrong — blah, blah, blah. And, I was to have scans again in mid-October. There’s been some new and not so good news since my last post. My creatinine levels have deteriorated from a stable 1.8 baseline to a baseline of about 2.3. This will preclude me from having any more CT scans with contrast (unless we’re in a life or death situation and simply must have the contrast). This is going to strongly, negatively impact our ability to clearly see what is going on inside my body in the future.

There is a new radiology group at The Medical Center and I’ve had the great pleasure of meeting the doctor who will be overseeing my case. He’s got a great name. One that I’d like to steal as the name of a character in my novel, if that ever happens. Virginia gentleman, Dr. W. Granville Batte, is a flatwater kayaker and a skeet shooter. I’m looking forward to introducing him to my kayaking buddies. He read my scans and through Dr. Pippas reported that they are stable. That is good news. What we’ve been able to accomplish is to live with this cancer as a chronic disease, not a life-threatening one. It is incurable and if it decides to turn it up a notch, it will kill me. But right now, it is stable and although it presents a challenge, I am able to live with it.

After a consultation with Dr. Dan George and Dr. Andrew Pippas, we’ve decided to take the Votrient route. Pazopanib is the drug name and it was approved for use against kidney cancer in April of this year. Although it is not the most potent of the drugs I could use, it is decidedly more kidney friendly and has a more manageable side effects profile. If you click on the drug name, the information about the drug will open in a new window. Most of the side effects won’t be visible to those around me, hopefully. What will likely happen that will be noticeable is that my hair will begin, very shortly, to turn completely white. Unlike some of the other choices we could have made, this drug isn’t supposed to destroy taste buds. These drugs are very powerful tyrosine kinase inhibitors and though they won’t deliver a cure, they can certainly prolong my life.

So, once we get all the financial implications of our co-pay for Votrient settled (this drug costs north of $100,000 per year), I’ll start taking the medication in a few days to a few weeks.

I’m sorry for the long dry spell. I haven’t been able to write and I’m just glad I was in the right place at the right time this morning for The Big Man to jolt me out of my writing reverie. This blog is a tribute to musicians of every stripe. Just how much good music does in the world is underrated.

Rest in peace, Big Man…..